At his long-awaited appointment with Dr. Perkins, the radiologists said there was a new cyst located down his chest near the top of his breastbone. After talking more about it, we remembered that during my pregnancy when we had an MRI, they did say there was a cystic pocket on his chest, but then this cyst didn't show up on the MRI he had at 4 months old. Either they didn't notice it, or because its fluid-filled it could've just been really small during that MRI. Regardless of when it formed (recent or not), they weren't concerned about it. It is not in a place where it can hurt anything.
Other not-so-great news is that the swelling in his big cheek that pushes his top lip to the side and creates an asymmetric smile, may not be fixable with surgery. Dr. Perkins said he would try and do a little face lift during surgery that will help a little, but his smile may never be "perfect". What does a perfect smile look like anyway? I love Noah's little Clint Eastwood smile!!! (so does his dad, of course!)
Besides that, it was all great news! His lymphatic malformation in his cheek is growing proportionately with him, and the cysts under his chin have done nothing but get smaller since birth. Praise the Lord. Lots of answered prayers. Dr. Perkins also said...
drum roll...
that Noah is out of the woods for needing a tracheotomy! Unless he got some crazy weird infection, he confidently said he does not anticipate Noah ever needing a trach. What a relief it was to hear those words from him!
I then asked him what his thoughts are with Noah's g-tube and removing it. He said it's our call as parents when we want to remove it, but his conservative answer would be to wait to get through cold and flu season before we take it out. Plus, we are tentatively planning his first surgery next spring, so having the g-tube definitely helps with the healing process and will speed up discharge time after surgery.
Sometimes they have to put g-tubes back in kids, so obviously we to avoid this and aren't in a hurry to pull it out. I asked Perkins how often they have to put tubes back in LM kids (versus g-tube for other reasons like failure to thrive for example), and he said he's never had to put one back in. Awesome news! The biggest challenge with LM kids is just getting them to the point where they are able to swallow and up to par on their nutrition needs. He doesn't suspect anymore LM growth in to his airway or affecting his swallow. Praise the Lord #15,072!
We don't have another scheduled appointment with Dr. Perkins until January, where we will most likely schedule his surgery for early spring. Until then, we ask for continued prayer for Noah to get through cold and flu season with no E.R. visits! :)
I look at Noah, and we are just so incredibly blessed. I can honestly say I don't take a SINGLE DAY for granted with Noah. Every morning I see those fresh eyes and crooked smile, my heart just melts. Almost every meal, I praise the Lord as I watch Noah shovel food in to his mouth. I guess that shows how excited I am that he eats so well, seriously 75% of my pictures of Noah he is sitting in his high chair eating! Hahaha just realized that... but it's a pretty big deal don't you think?!
It's been such a different summer than last. We met my cousins Steve & Laura and their sweet daughters at the park yesterday (who we haven't seen since last summer), and even Laura said I seem so much more relaxed and less stressed than last summer. When you're in the middle of it, sometimes you don't realize how heavy your load is... I've always tried really hard not to be a Debbie downer regardless of my circumstances, and I thought I was doing a good job and fooling everyone that I was not overwhelmed with my life last year. Apparently not! Apparently it was obvious that it was a pretty tough time for me-- easier than '08 when I was pregnant with a horrible prenatal diagnosis, but still pretty pushed to my limits.
As cheesy as it sounds, the overused "footprints" poem is so true-- Christ carries you in those difficult times when you feel so alone and physically and emotionally exhausted. I have no idea how I survived the past year. You never know how strong you are until the storms blow in... or is it how small I am and how big God is? He has definitely shown me a lot about his might, his sovereignty, and most importantly his grace.
Ella climbed to the top of the linen closet and played for about 10 minutes before I realized where she was... my parenting at its best :)
Fun at Poppy's!
1 comment:
Andie, so good to hear, I had been waiting for news. You do such a good job explaining things. Don't know how you do it, but I still think you should write a book!! Excited about Noah's being a celebrity!! How wonderful! Somehow through all this God has kept you and your needs fresh on my heart for prayer. I don't just understand all that for sure, but the prompting to support you in prayer has been there and is still very strong...all this time, since you were first given the word that something was wrong. So I praise God with you for his faithfulness in holding you up through the very most difficult times. We know He is faithful and he won't ever let you down. I can see that YOU and Kyle have also been faithful in depending on God, much to your credit! And that has been evident to me from the beginning of this also. Love you, and thanks for the update.
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